In this episode, a mother shares her experience of the recent diagnosis of her son with Asperger’s Syndrome. She discusses the journey to the diagnosis and how well-meaning, but often misguided advice from family and friends can make this already difficult journey all the more painful. She discusses her son’s experiences being bullied in school and the pain of watching your child grow up without friends.

Voice: Welcome to the Just Ask Mom podcast where mothers share their experiences of raising children with mental illness.  Just Ask Mom is a Mothers on the Frontline production. Today we will speak with a mother whose son was recently diagnosed with Aspergers.

Tammy: Tell us something about yourself.

Mother: That makes it really tough.

Tammy: I know.

Mother: Right? You think it’s all easy and then you are like…. I’m a middle age woman that is a mother of a single child. We’re on the path for a diagnosis of Asperger’s. This was a recent diagnosis, or process of a diagnosis, for us. It was a bit of a shocker. Prior to having my son, I nannied for 17 years, so I was around kids, help raise kids, manage kids. My son came along. Everything seemed fine, until now, when we really started to notice some differences and the fact that he is very routine-oriented. And just some of the changes that we’ve seen compared to the other kids. But this is tough.

Tammy: It’s tough.

Mother: Man.

Tammy: It is.

Mother: My favorite thing to do – technology. It is always something with a cell phone or the computer – a gadget of some sort. So, that is what I spend a lot of time doing, that and taking pictures.

Tammy: So that’s what you enjoy doing.

Mother: My son lives in front of the camera. Poor kid. I love him to death but.. he’s like, “Hey, you got that on my face again?”.

Tammy: It’s nice to share a passion, right?

Mother: It is.

Tammy: So that part is really good. So, you are going through this with your son. I want to know what you would like other family members to know. Who you know, because we have a lot of people out there who are going through this and they probably feel the same way. What, you are the one in the middle of it, what do you want family members who they mean very well but don’t- aren’t in the middle of it. What do you want them to know? What would you want to say to them?

Mother: So, let’s go back probably about seven months ago, when we hit a rough spot with our son, who had a day where he was so overwhelmed that he couldn’t function at all. And at that point I knew we needed to do something. We needed to figure out what was causing all the behavior and triggering this because he literally was just a body. His eyes were glassed over. He just would sit and cry. He couldn’t get dressed. The thought of going to school made him physically sick. This is a kid who up until this point loved school.

Tammy: Really?

Mother: That’s when I intervened and said, “Okay, you know, we got to do something”. After talking with family members– they were giving great suggestions, you know, trying to help —but we knew we weren’t on the right path. So we intervened with a therapist who has worked really hard with our son. With a suggestion of a friend I looked at what we felt potentially was Asperger’s and looking at our son knew that he had a lot of the same characteristics. A lot of the same things – looking back of course as a parent you feel really guilty. Because you didn’t see these things sooner but getting that groundwork work with that therapist helped me immensely sit down with my parents, with my in-laws, with my husband, with my siblings, and talk to them about what we’ve seen, what we see going forward, how we are going to try to approach things for him. Because it’s not easy. It’s very stressful. His stress is also my stress. And when he is worked up, then I can’t relax and it just throws the whole family dynamic off. Of course we got the “it’s because he is an only child? It’s because you are too hard on him. maybe if you did more with him. If you took him out and have him do more things he would be more social. That’s part of it. You are not exposing him to enough, you know? Are you sure that he’s on schedule that tight? Have you, you know, really sat back and watched?” Most definitely. The kid gets up in the morning. He has his specific clothes in mind before he gets out of bed. We lay there and talk for five minutes. He gets up. He gets dressed in a specific order. I have tried to change that up. It turns the world upside down. I’m just thinking, “Ok, so much as putting your socks on before your pants can’t be done”. But if in your mind that’s what you need, I’m fine with that. I’m okay. But until I tested that a couple of times, did I find out, right? I just thought, “Oh, it’s just him being particular about one thing”. But we have a certain routine with getting dressed. A certain way to put deodorant on. A certain way to put cologne on. We have to hit the bathroom at a certain time. We don’t do our hair, we make our hair.

Tammy: Really?

Mother: Yes, he makes his hair every morning. So, whatever style he has in his head, he makes it.

Tammy: I see.

Mother: I don’t understand where that comes from, but that’s ok. It’s not worth an argument over come at the end of the day. He eats the same food for breakfast every day until he is tired of it. He eats the same for lunch every day until he is tired of it. So, it’s very, very specific. We have to live this with him every day.

Tammy: Does he get very anxious if anything goes off his schedule?

Mother: Yes. It causes major issues. And he’ll start to fidget. Mostly he’ll either pick at his fingers or hands to try to calm himself. Compression shirts have made a huge difference for him.

Tammy: Wonderful.

Mother: Convincing him to wear them on the other hand was not easy. It took a lot of work but we’re there. It’s a safety blanket now so we don’t leave home without them.

Tammy:

Mother: I’ve invested in. I don’t know how many shirts we have in every color because for him his shirt has to match his pants. And his shirt and his socks have to match or we have an awful day. You cannot use black or blue as universal color. It is specific. It has too match. So it’s very, very tough. I never thought about this. We can do a whole series on shopping with an autistic child – it has to be a certain fabric, a certain color…

Mother: They have to fit a certain way.

Tammy: If you do it then that it’s going to help the child be well throughout the day.

Mother: Yes. It makes a huge difference. And for someone who doesn’t see this, for someone that’s not behind those closed doors on a daily basis, they can throw all kinds of great ideas out there to help you, but until they are in your shoes, they are not going to get the full picture. I would like to have more family members there to see how our days go. To give them more insight because until your hands on, you don’t get it. You see him as this spoiled child who’s throwing that temper tantrum because something, you know, to us seems so small that didn’t go right. But to them it’s significant. It’s hard for them to process it. And the lengthy talks that we have incorporated into everything that doesn’t go right to turn it into a lesson, and explain why things are going the way they are and try to help, navigate through so that they get it. It’s not easy finding the correct language to use so that you don’t frustrate them that much more. It causes a lot of stress on mom.

Tammy: Absolutely. Absolutely.

Mother: Because it’s a lot of trial and error, and with family you get stuck in the middle of that because you’re trying to do what’s best for your child. But yet, you are trying to get them to understand and you don’t want to offend anyone by not doing what they have suggested. But if you go back at them with any sort of evidence then they are upset. Even though they’re meaning well and trying to help, they are mad because you didn’t try it. And it’s just- you feel like you’re stuck in the middle of a cyclone. Because everything around you it’s just spinning so fast.

Tammy: But everyone else gets to conveniently leave the cyclone except for you and your son, right?

Mother: For sure. You’re exactly right. And it’s so crazy because when it comes down to it the more schedule oriented we are, the most smoothly things go, and the better days that he has. But if we are off task, it’s hard to get back on. I didn’t realize how hard that could be until I started reading and understanding what we are dealing with. And now it’s like a light bulb moment and to me it’s becoming second nature. When we took a trip over the weekend, to not come home is significant for him. He has his bed, a certain routine. We don’t mess with that very often. But when we do, we know it’s going to be bad. And so we talk about it for days. I have family that would say, “You’re treating him like a two-year old”. “You are talking about this way too much”. And I’ll say, “But we need to talk about it so that our trip goes better”. If I don’t, his behavior is going to be horrible. And I get the push back. “He’s 11, he knows better”. Theoretically, yes. But with what we are working on, it doesn’t click. It’s ok. We talk about it, we’ve got it all figured out. Just don’t mess with his routine and it will be ok. Once we get there, it’s fine. And he’ll have fun. But we have to work through that on a daily basis. We talk about his school schedule on the way to school every day because he has a couple of classes that change. It’s ok. If we don’t, he gets confused.

Tammy: So it’s very important for him to know what to expect. But if that’s expectation is disrupted, it’s very anxiety participating for him.

Mother: Oh, for sure, it’s definite. And it can through the entire day into depression. And come evening, after we do supper, and we shower, and we take our night time pills, and it’s time to brush the teeth and head to bed, don’t take mom out of the equation. If mom is not there to tuck him in, he will stay up until who knows when. It is horrible. I want to be home because I know if I’m not then he is not going to bed until I get there. I can even text. I can call and tell him goodnight, and he is still staying awake.

Tammy: That’s a lot of pressure because I think as a mom you expect that the first few years of life, right?

Mother: Yes. Yeah, you’re exactly right. You know, being a nanny. Not that I was there a lot for those kids –  I was on call 24 x 7, 365 because the family that I worked for had commitments that would pull them out at all hours of the day and night. I would go in early in the morning. I would be there late at night. I could put those kids to bed, right? Wasn’t a big deal. Or you can be like, “Ok, it’s 8:30 it’s time to go to bed”, and they go. Not with him. Oh no, you will be there, you will tuck me in. We talk about our day and then I’m going to sleep. Until then, it’s off the table. He will find any excuse possible to be up. And it’s so hard because then you’re confined to being home all the time or being with him all the time, in which case you never get a break.

Tammy: Right. And that backs up on us as moms?

Mother: Yeah.

Tammy: That affects our mental well being.

Mother: For sure.

Tammy: Because we need a break, right?

Mother: You need that break. You need that time away. Yeah you go to work in most cases.  Mom takes the kids to school and then she goes and that’s her eight hours or whatever of work. But you come home and there they are and they want to see you, and you want to see them. And so, that cycle continues. You don’t get that downtime, the time to process that you really need to so that you can stay healthy. Because it’s tough. The stress level. And of course, you start to adapt to it. But once you do, there’s a new challenge that comes your way. And then you are like, “Ok, how am I going to face this? How do we approach this?” You learn who you can lean on.

Tammy: Yeah, that’s true. You do know who your friends are, don’t you?

Mother: Yes, and you find out really quickly. Because you’ve got those friends that regardless of what you just find out, call you and say “Hey, how’s your day?”. You’ve got some family that do but really they are prying for information. They really don’t care – because they just want to know what the latest scoop is and what you find out, right?

Tammy: I see.

Mother: But I’ve got a really great friend who no matter what willl call and say “Hey, you know. I know you guys have supper schedule in 30 minutes, can we go for a quick walk?

Tammy: That’s wonderful. So you have a support system.

Mother: I do, but I’m learning that sometimes what’s convenient for her, it’s not convenient for me. And so, having to work on that because if I say, “Oh well, yes, supper is not for other 30 minutes”, “I’m leaving”. I’m sunk because now he’s home – which he’s fine being unattended for a day. I check in on him all the time. But I’ve walked in, I’ve talked to him. We’ve discussed few things. Maybe worked on homework. And now, I’m leaving. It does not go well. If I come home and I say, “Hey, I’m leaving in 30 minutes. Let’s get this, this and this done”. And then I’m going to go for a walk and I’ll be back. It’s ok.

Tammy: Because it’s all part of the plan.

Mother: Yes.

Tammy: So, spontaneity it’s sort of off the table.

Mother: Completely off the table. Whether it’s at any giving point, whether it’s changing– the beginning of the school year is always awful because the unknown in the schedule. The school year changing buildings was horrible. It took over a month to get squared away. And that was before the diagnosis, so we were clueless. And of course, I was extremely frustrated because I’m like, “Oh my goodness, man. It’s not that hard”. And now I’m like, “Oh, yeah it was”.

Tammy: It was that hard, yeah.

Mother: Because he’d smile, he’d go to school, he wouldn’t complain and now I’m thinking, “What was in his head? How is he getting through all this?” Because if that were me, I’d have been blown away. I would have been crawled up in a corner somewhere thinking, “I can’t do this”. And at his age, he went through it- I mean, yes, his behavior was a little rough. But all things considered, I was shocked.

Tammy: I think that’s something we don’t talk about enough is how incredible strong our kids are. They are managing and coping with so many things that other people can’t even see, including us, that are invisible to us.

Mother: Yes.

Tammy: And they are getting through it, and they are not getting kudos for that, right?

Mother: And that’s what I talked to a teacher about. You know, when we’ve talked about things- and kids in general-  when they are doing well, they need to know they are doing well. It’s not just that bad behavior. It can’t just be that because when they start to predict that they are that bad kid. And that their bad behavior  – no one wants to be around them. And nobody wants that.

Tammy: No, no.

Mother: You know, we’ve talked to our son about it– he has no friends.

Tammy: That’s one of the hardest parts, isn’t it? Just saying that, yeah, that’s very hard.

Mother: So in the meetings with the teachers, in the meeting with the family, I’m like, “Can you guys name who he hangs out with?”  They are usually like, “No, I guess we never paid attention.”  My family is like, “Well, I guess we’ve not really noticed that.”  Come birthday parties —  he doesn’t get invited. You know, come time for his birthday party, nobody shows up. Which…

Tammy: …it’s heartbreaking.

Mother: It is. And when it comes down to it, he doesn’t have that buddy that he wants have over on the weekend or someone who will hang out with and play video games or any of that. To see that and to talk to him about that is tough because he doesn’t see that other kids have this going on. In his mind, he’ll tell you he is friends with everyone because he’ll speak to everyone and everyone speaks to him. The response he gets may not be a friendly response, but in his mind, “Hey, they talk to me”.

Tammy: Does that worry you in terms of him being teased or bullied?

Mother: Yes, because it’s happened already.

Tammy: So, he thinks someone is being his friend but they are actually not treating him well?

Mother: Yes. Perfect example of that it would have been late fall. He was riding the bus. And he could tell the name of this other student that he walked to a corner with and the student went one way and he went another to come home. And it was just like casual talk about this person who were there. But then at one point I tried- I texted him, to see what was taking him so long to get home because I’ve got the alerts that it go off when he gets within so many feet of the house so that I know he’s home. So for my peace of mind I can rest a bit. You know? And he wasn’t getting home on time. And so, I texted his phone and I said, “Hey, can you tell me why you are running late?” And I got a really weird response back. Not a normal response from my child. So, I picked up the phone and I called. And someone answered it but there was no hello really quickly on the other end of the phone. And once he got on the phone I said, “What is going on?” And he’s like, Oh, well, so-and-so had my phone. And I said, “We’ll discuss this when you get home, but I’m going to keep talking to you until you walk the other way, and I know that you are home. And when I get home, we’ll talk”. When I got home that night, we talked about it. He said “when I got my phone out of my bag pack like I always do every day and I unlocked it and she reached over and took it from me.” And he is like, “Mom, I don’t understand why you are mad. She was just joking”. [I said] “No, that’s not a joking behavior”. I said, “What were you told at school?”. “Oh, yeah, we’re not supposed to touch other people’s property”. And I said, “Is your phone your property?”. “Yeah”. I said, “See? That is not acceptable behavior. What else has she done to you?” Feel free to tell me. I need to know these things so that we can take care of you. Of course she was shoving and picking on him. I said, “Can you explain to me how or why you think that she is your friend? He said, “But we talk”. “No buddy, that doesn’t make anyone your friend. A friend is going to stick up for you. A friend is going to be there when you are having a bad day to cheer you up. Shoving someone around, calling you names, taking your phone, that is not acceptable behavior”. But we are also talking about a child who got kicked in the groin in the kindergarten and has permanent damage from it.

Tammy: Oh, poor guy.

Mother: When that happened, we weren’t told.

Tammy: Really?

Mother: Not at all. We brought him home. I brought him from home school that day. Nothing was said. There was nothing in the bag pack. No phone call, no email. I went to put him in the tub that night and his whole groin area was black and blue.

Tammy: Oh, the poor guy.

Mother: So, of course, that result in mom being, “what happened to you?” And by the way, dad needs to come check you out because that’s totally awkward for mom to do it.

Tammy: Was he able to explain what happened?

Mother: He told me that another child was holding the door open when they were walking in from recess and the other child decided to kick him.

Tammy: But he didn’t think to tell anyone?

Mother: He told the teacher who said, “You’ll be ok”, and told the other student to settle down. He wasn’t sent to the office and I said, “I understand you all can’t check his groin. I get that. But a phone call so that I could have come to check him out.

Tammy: Make sure he is ok.

Mother: Or the offer of an ice pack would have been nice, but instead we find it at 8 o’clock at night when we are putting him to bed.

Mother: He went to the doctor the next day. He has a testicle that’s lodged up inside from this.

Tammy: How old was he at the time?

Mother: Six.

Tammy: Oh goodness.

Mother: To make matters worse, for three months twice a day I had to try to manually move that.

Tammy: Oh, poor kid.

Mother: How awkward for him and I both, right?

Tammy: Oh, absolutely.

Mother: When the other child- they called that child’s parents. It was, “Well, I know that sounds bad but, he’s like, what did he do to deserve it?”. That’s what was said back to us. So he’d had issues and again. He thought that kid was his friend. I was just thinking, “Buddy, you deserve so much better than this”. You’re such a good kid.

Tammy: That’s hard. So, we ask everybody at this moment, right now, do you feel like you’re swimming, draining water, drowning, what do you feel like you are at?

Mother: Treading water. We’re- we’re getting there. Two weeks ago I would say we were sinking immensely. Um, we’ve come a little bit- we’re getting a little ground. So I can ease up a bit but as summer’s coming, I’ll be drowning here soon.

Tammy: Yeah. Summer is tough.

Mother: It is. And trying to figure it all out for them.

Tammy: What do you do then? Like, what’s your self-care routine or if more relevant, what do you to survive those tough times?

Mother: I turn a lot to my camera. Whether it’s loading up my son and we go to a sporting event and I know it’s something that he will want to watch, and I’ll take pictures. And then I can go home and be on the computer and edit those. Just kind of not really completely shut everything out but be in that bubble. And just focus on the task at hand and not have to worry quite as much. It helps immensely.

Tammy: That sounds great. So, through all of this, what do you think has been your most laughable moment?

Mother: I know this sounds really bad, but watching my son talk to his therapist and get a full idea on his diagnosis, because he himself grasps it now. And he laughs at what we see and so we can laugh with him over it. Because it was so stressful to even get him to go to the therapist. And now he’s comfortable there. He knows that what we are working on it’s not a life-threatening thing. And he can joke with us about things like that now which eases family tensions so much. I know that’s a tough thing to really have us a laughable moment. But come the end of the day it’s made things so much easier for all of us that he’s taking us with this with a grain of salt. He laughs, he jokes, and he understands what’s going on. Taking him to the doctor was another good one. The poor kid had four shots.I laugh as I’m holding him.

Tammy: Right. Every mom, every dad can relate to this. No one likes their shots.

Mother: No. And we’re- we’re strategizing right? Like, “Okay, don’t look. Look at mom. Mom is across the table. Don’t watch the nurse”. You know? And he’s screaming at the top of his lungs. We’re thinking, “Come on, it’s okay. You’ve got four of them, it won’t take long”. And he watched the first shot and he’s like, “Wow, what’s the big deal here?”. He’s like, “That didn’t hurt”. We could let go. And he laid there.

Tammy: And it was nothing.

Mother: No, it was nothing. He is like, “No big deal”.

Tammy: That’s great, that’s great.

Mother: So, he provides a lot of laughable moments for us.

Tammy: Yeah. Well, that’s awesome. Well, thank you so much for sharing your story with us.

Mother: Well, thank you.

Voice: You have been listening to “Just Ask Mom”, recorded and copyrighted in 2017 by Mothers on the Frontline. Today’s podcast host was Tammy Nyden. The music is “Olde English” written, performed, and recorded by FlameEmoji. For more podcasts in this and other series relating to children’s mental health, go to MothersOnTheFronline.com.